Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach

Abstract

BackgroundThere are diverse opinions and confusion about defining and including patient values and preferences (i.e. the importance people place on the health outcomes) in the guideline development processes. This article aims to provide an overview of a process for systematically incorporating values and preferences in guideline development.MethodsIn 2013 and 2014, we followed the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach to adopt, adapt and develop 226 recommendations in 22 guidelines for the Ministry of Health of the Kingdom of Saudi Arabia. To collect context-specific values and preferences for each recommendation, we performed systematic reviews, asked clinical experts to provide feedback according to their clinical experience, and consulted patient representatives.ResultsWe found several types of studies addressing the importance of outcomes, including those reporting utilities, non-utility measures of health states based on structured questionnaires or scales, and qualitative studies. Guideline panels used the relative importance of outcomes based on values and preferences to weigh the balance of desirable and undesirable consequences of alternative intervention options. However, we found few studies addressing local values and preferences.ConclusionsCurrently there are different but no firmly established processes for integrating patient values and preferences in healthcare decision-making of practice guideline development. With GRADE Evidence-to-Decision (EtD) frameworks, we provide an empirical strategy to find and incorporate values and preferences in guidelines by performing systematic reviews and eliciting information from guideline panel members and patient representatives. However, more research and practical guidance are needed on how to search for relevant studies and grey literature, assess the certainty of this evidence, and best summarize and present the findings.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-017-0621-0) contains supplementary material, which is available to authorized users.

“They Should Be Asking Us”: A Qualitative Decisional Needs Assessment for Women Considering Cervical Cancer Screening

“…Shared decision-making processes can reconcile individual and population perspectives for cancer screening by addressing the individual acceptability of tests in the context of HCP values and evidence-informed recommendations (Grad et al, 2017; Lang et al, 2018). Therefore, a shared decision-making framework can guide processes to elicit preferences in cancer screening, aligning with person-centered and evidence-informed practice (Hoffmann et al, 2014; Zhang et al, 2017). To support preference elicitation and shared decision making in cervical cancer screening, we need to know how stakeholders, including women eligible for screening and HCPs, perceive the decision.…”

Development and field testing of a tool to elicit women's preferences among cervical cancer screening modalities

“…Some researchers have suggested that valid, acceptable preference‐elicitation tools might facilitate the integration of women's preferences into cervical cancer screening clinical practice and guidelines, because the tool promotes values‐based decision‐making in an evidence‐informed way. “Cervical cancer screening—it's your choice” explicitly acknowledges that women face a decision to undergo cervical cancer screening, and if they choose to participate, they may choose different options because they value the risks and benefits differently.…”

“…Among Canadian jurisdictions, cervical cancer screening recommendations do not explicitly refer to women's preferences for screening despite the potential importance of different values and preferences. Specifically, guidelines do not allude to population estimates of preferences, and there are no recommendations for providers to elicit preferences from women at the point‐of‐care . To be consistent with the person‐centred, evidence‐informed vision of high‐quality health care systems, cervical cancer screening guidelines and practice would ideally integrate women's informed, values‐based preferences.…”

“…Moreover, it is unclear how cervical cancer screening practice and recommendations can most appropriately incorporate women's preferences. Increasingly, guideline developers are encouraged to present population‐based patient preference data in guidelines, though an alternate strategy might involve eliciting personal perspectives during clinical encounters as part of shared decision‐making.…”

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